Following on from previous posts , many posts think I can absolutely without doubt or hesitation say I am absolutely F&%@ing fuming. Gp's had asked for repeat bloods again, I kept telling them to follow NICE guidelines and that B12 shouldn't be tested once treatment started, they consistently ignored this fact. So last Thursday she and I both had bloods , hers B12, folate, vit D, FBC.
Now last time these were done I was surprised they were Active B12 , now it seems the lab used has reverted to Serum B12.
At the top it says "satisfactory no further action required. "
She was due her next 8 weekly jab next week, having an absolute mare of a life right now, so bit my tongue and after picking them up this morning decided it would be better to not go there right now. When I have calmed down I'll try and address it ,
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Polo22
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My understanding is that doctors do not have to follow NICE guidelines, they can use their professional judgement to prescribe treatment they feel is appropriate even if it does not follow NICE.
Was it stated to health professional that they were not to test B12?
If they have tested something without permission they could be in trouble...look into "informed consent medical treatment"
No problem: I went around to the other side of my table and tipped the screen toward me. A backward thinker !
My GP was always happy to test vitamin D, thyroid, ferritin and folate and leave B12 out as "pointless" (her words). She knew B12 would be high: I was getting 2 injections a week from the nurse on her instruction. Shame she left the practice.
My B12 is likely to always be >2000. My Oral Medicine consultant was at first totally distracted by this "sky-high" level (I was honest about self injecting B12 twice-weekly) as he thought, with good reason, that past this limit, it is impossible to tell if this is an accumulative result. Naturally, he was concerned. Later, he told me that he'd discussed my case with colleagues: they had changed his mind completely and he now believes that my body needs this level of B12, NOT to try and reduce the frequency, and that tablets would be "useless" (his words or their's: who cares ?) I did not ask at the time who he had spoken to, and he did not include this new viewpoint in his report to my GP practice - but crucially he did say it in front of a group of his students.
If your daughter's serum B12 was in the 800s at week 7, it would be interesting to know what her MMA was doing then. Hopefully transporting the B12 that is needed to cell and tissue level. Otherwise, it would still feel like a deficiency- because B12 would be sitting redundantly in bloodstream with the MMA. MMA can be difficult to test at primary care level because many hospitals do not provide this test. My GP managed to find a hospital willing to do this at the third attempt, and they confirmed her suspicion : she diagnosed functional B12 deficiency, having ruled out any renal problems already. She then wanted to give me EOD injections, but the nurses were apparently "too busy" to book in more than two a week. Scaredy-cats.
A very good doctor who was acting on advice from consultants. Nurses would tell me that messages were going frantically back and forth between them.
.... So there are medical professionals who understand enough to observe symptoms, there are medical professionals who are advising other professionals correctly, and there are teaching consultant professors who are able to completely change their mindset - which will then be passed on to students.
Just not enough of any of them. YET.
Is your daughter being treated any better for vitamin D deficiency ? Has her MMA been tested ? Ferritin and folate monitored ? Is this GP worth more effort or is there another option ? Trust is more important than knowledge, which is easily sourced. It must be - we've all done it at our very worst !
Calm yet ? Don't send anything till the third draft has been proof-read the next day !
We have no definitive dx for her need to go back through notes and stuff to see what they have tested and what they haven't. Assuming MMA hasn't been. I have to keep reminding them, about having to retest, she's been px'd vit D and folic acid (not folate) since just after Christmas, is good at taking them, she copes with the oily pearl ones but got given little capsule type ones one month and they made her sick. Can MMA be tested privately, bet it's expensive. I do wonder about getting her records from hospital. When she was little she had a sizeable umbilical hernia, it was removed and surgeon afterwards said it was a much more complicated fix than he expected, never explained. It was supposed to be a 10 to 15 minute op it took him 40/45 minutes he said. She was never right after, always getting severely constipated, throwing up, eventually they said she had abdominal migraines, on meds for years that eventually were withdrawn over concerns.
She had a major spinal operation end of 2022, scoliosis they said it was idiopathic but vit D and B12 deficiencies have been linked to it as causative factors.
I am not a medical professional, just someone who has had a lot of tests and seen a lot of consultants.
I'd expect a private MMA test would be expensive but have no idea - since I got 6 in all from NHS. Once MMA dropped into range on the 6th test, tests naturally stopped. It took three years of frequent B12 to get to there though.
If it was me, I'd like to know exactly what happened during the operation: what was the complication and how remedied. Also what were the concerns regarding long-term medication : what was she given for abdominal migraines. Not something I've heard of before. There are plenty of medications that incidentally deplete B12.
So medical records might give you more of an idea. It's a place to start. Trust your instinct on that. If any suspicion proves to be unfounded, no harm done and something to cross off the list.
Have you got a follow-up appointment to discuss the test results ? A few high-end/low-end results and too many !!!s I'm thinking.
Scientists here may be able to help with some of them. FlipperTD for example.
Too be honest I feel rather guilty about it all, huge swathes of my past are blank or muddled. I think due to being undiagnosed ADHD and constantly masking. When she had surgery youngest with designer genes was still poorly ish and breastfeeding, considering it was a children's hospital and bf is normal I was not made to feel ok. Probably why the surgeon legged it 🤭, before I had a chance to enquire. Afterwards the digestive problems became really distressing for her and us. We had to replace the carpet in a large extended lounge twice in 12/18 months. She had various investigations/ x-ray's barium swallow , scopes then they said Abdo migraine I'd never heard of it either. She was put on Movicol 2x daily and Domperidone, to apparently speed the process of food transit through the stomach, as it was sluggish, and as an antiemetic , could have been caused by the surgery, but this was never mentioned. It was withdrawn due to serious concerns about cardiac issues, there had been reports of cardiac arrests arrhythmias and sudden death.
she was a little scrap , like a doll before surgery and after just kept getting bigger, I feel for her because she is so low all the time, fatigued to the point when she does eventually fall asleep , because she can take hours and hours to go to sleep , she crashes and then she is in so much pain when she gets up as her joints, back , hips are sore and aching, she has huge metal rods all down her spine and 18 months after surgery her mobility and flexibility is poo
Ooh, will have to look for that, she had been hiding her problems and because of her age I put it down to usual teenager embarrassment about her changing body, it wasn't until lockdown she slipped up one day and I saw her back. Her first appointment at hospital the doc said usually waiting time for op could be 3 to 4 years but usually people don't arrive at first appointment with a curvature of over 92%. They did what they could but it isn't back to normal , I just wish someone would actually do something to help her,
Thanks for looking this up, I won't read tonight having a mare. Spent 3 hours on a zoom ASD assessment with her, well actually a full developmental assessment and history. Came out of it spent 🤯. I haven't as yet seen her records but next step will be a SAR's to them. She is so well, disabled by it all. Trying to do her GCSE's at the moment , she isn't hopeful, this was the child who was originally on track for 8/9's in everything.
On top of all this eldest is being evicted and trying to sort out defence papers, his PIP review and just crappy stuff really. Not easy when I can't think straight because my bods being starved of FT4. still 😢
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